Monday, March 18, 2013

Bits and Pieces: Getting on with Life Edition

(Please note: for those who receive these essays via email, this post contains videos which can only be viewed on the Wheelchair Kamikaze website)

The last couple of weeks have been tough. Losing my friend George, The Greek from Detroit, really hit hard. I’ve never before suffered the premature loss of someone with whom I’ve been so close. Of course I’ve lost loved ones, but they’ve either been elderly, in which case there’s solace in the thought that they lived full lives, or folks for whom I’ve felt affection for but not the extremely close bonds shared with someone in my “inner circle”. The fact that George and I bonded over our shared struggle with a debilitating disease, and that his death was directly related to that illness, only serves to focus the despondency.

Mourning is a strange process. For whom am I actually grieving? George is at rest, the despair he felt at the ravages of his multiple sclerosis ended. From that respect, at least, it would seem that those who knew him should be grateful that his long struggle is over. But I mourn for his life that was upended, and his life that could have been. I feel sorrow for all who will miss him, for all of those who held him dear. But most of all, if I’m completely honest, I mourn for me, for the fact that I’ll never again answer the phone and hear, “Kazmo, this disease fucking sucks!”

Of course, I have other friends to talk to, but George’s tremendously emotional manner was contagious, eliciting, at least in me, a license to let rip with all of the foul miseries and mindbending fears that helplessly watching a creeping paralysis devour your body brews in your brainpan. Yes, I still manage to find some good in (almost) every day, but there were days in the past few years when a significant portion of the good I found was talking to George.

Be that as it may, the world doesn’t stop spinning, the sun doesn’t stop rising, and life must go on. So here’s a collection of MS related items that aren’t too glum or weighty, but include a cause to rally around, some mindful artwork, a few helpful MS hints, and even a healthy dose of sex. What better to focus the mind back where it belongs, on the naughty bits. Believe me, George would approve…

♦ First up, a chance to help a fellow MSer and become a mini movie mogul, all in one fell swoop. Jason DaSilva is a young filmmaker whose work has been seen at film festivals around the world. About eight years ago, at the age of 25, he was struck with progressive MS and decided to turn his camera on himself. His new documentary, When I Walk, chronicles the first seven years of his struggle with PPMS in unflinching fashion, showing the effects of the disease warts and all even as it exposes the heart and soul of the man at the center of the storm. When the film opens, Jason is having some trouble walking; by its end he’s using a scooter full-time, his vision is increasingly affected, and the disease is attacking his hands. In between, we experience the physical and emotional roller coaster of MS as Jason searches for answers and possible cures, and though one might think this would make for gloomy subject matter, the film is an inspiring testament to Jason’s courage, the power of love, and the enduring nature of the human heart. Even as Jason’s body betrays him, he manages to find his soulmate, a woman special enough to love him despite all of the trepidation and uncertainties that come with MS. When I Walk had its premiere at the recent Sundance Film Festival, and received rave reviews (click here). Here’s the When I Walk trailer:

So, it would seem all is well in When I Walk land, right? Unfortunately, that’s not the case. Though the film got a big reception at Sundance, it really needs to be seen in cities around the country and around the world. It shows the side of MS that the public rarely sees, not the sanitized version most often portrayed on television and in the news media, but the Full Monty of ever advancing disability and its effects on the body and mind, capturing the jumble of emotions of the human being trapped inside an increasingly faulty body.

The realities of independent filmmaking today requires that filmmakers themselves raise the funds needed to get their works onto movie theater screens around the country, and Jason has started a Kickstarter campaign (click here) in an effort to do the necessary fund-raising. Kickstarter is a website allows individuals to contribute as little as one dollar to a wide variety of artistic, altruistic, or business endeavors. Jason’s goal is to raise $27,000 by April 3, and as of this writing has almost $19,000 to go. He’ll use the funds to do marketing, advertising, and promotion for the film, as well as pay for printing and duplication costs of the film and its trailer.

I don’t think I’ve ever before made a direct plea for financial donations of any kind on Wheelchair Kamikaze, but I was lucky enough to get a chance to preview this film, and it really struck a chord. So please, if you’re able, chip in as little as one dollar to help kickstart When I Walk into a theater near you (click here), and thus help a fellow MSer tell his story and show the world the realities of living with MS and the courage it takes to battle the disease day in and day out. Thanks.

♦ Check out the cover of the March issue of the journal Neurology, one of the top medical journals in the world:

Can you guess what lies at the heart of the striking piece of abstract art on the cover, called “Celebration”? I think you’ll be surprised to know that it’s (drumroll please)…

My brain!

Artist and MSer Elizabeth Jamison (click here to see a gallery of her work) uses MRI images to make her compelling etchings, and a few years ago I sent her several images from my MRIs and MRA’s (Magnetic Resonance Angiograms), one of which she transformed into the image that is right this moment gracing the cover of a journal sitting in the offices of neurologists all over the world. Pretty nifty, don’t you think?

Elizabeth is herself an inspiration, as the MS that she’s suffered from for over 20 years has progressed to the point that she is now a quadriplegic. Still, she continues making her art, using a surrogate as her hands as she choreographs the artistic process. Her work is gaining attention worldwide, and will be featured in an exhibit in Barcelona next month.

♦ Here in the northern hemisphere, it’s almost spring, and if things go as planned, summer will soon follow. That means the temperatures will be rising, and many folks suffering from MS will be wilting. Heat sensitivity is a hallmark of multiple sclerosis and for many people with MS, myself included, warm temperatures are like kryptonite. Once the temperatures get much above 80°, I can literally feel the energy being drained from my body, and I start losing whatever functionality I’ve so far managed to retain. Strangely, when the temperatures soar, I seem to be negatively affected even if I stay inside my air-conditioned apartment. Defies logic, but it’s the truth. Fun fact: before the advent of the MRI, one of the methods used to diagnose MS was to place the patient in a hot bath and see if their symptoms got worse.

So, what can a patient do to combat these summertime blues? There are many forms of cooling garments, from vests to headbands to scarves, available from a variety of manufacturers (click here). If you are an American person with MS who is in financial hardship, both the Multiple Sclerosis Association of America (click here) and the Multiple Sclerosis Foundation (click here) have programs offering cooling equipment to qualifying clients, free of charge. Don’t be shy, both groups do terrific work, and the heat of the summer will soon be upon us.

♦ Now, finally, the subject you’ve all been waiting for, sex. The Sexuality and Disability webpage (click here) is a comprehensive resource for all things having to do with, well, sexuality and disability. From information on sexual morality to the actual mechanics of sex when dealing with a disabled body to relationship issues to sexual violence, this site is a veritable almanac on sex, sexuality, and relationships for the disabled person. I especially love the modified handicapped icons that grace the site’s front page, which depict a person in a wheelchair and their partner in all sorts of imaginative hijinks. Must’ve been fun coming up those, although some look to be a bit treacherous…

“Don Juan in a Wheelchair” (click here), an article from Salon.com, was written by a man with cerebral palsy, and explores his determination to lose his virginity. The article brought to mind two recent films that deal with similar subject matter, The Sessions and Scarlet Road.

The Sessions is a terrific, touching film starring John Hawkes and Helen Hunt, which tells the real-life story of Mark O’Brien, a severely disabled man who was afflicted with polio in childhood. Because of the weakness in his muscles, Mr. O’Brien had to spend most of his time in an iron lung, except for stretches of three or four hours at a time when he could survive with the aid of a portable oxygen unit. His entire life was spent lying on his back; despite this, he was able to earn a degree in English, and worked as a writer and poet, managing to get out and about on a gurney wheeled around by an aide. The film takes up his story in 1988, when, at the age of 38, he decided he wanted to lose his virginity and contacted a registered sex therapist. The Sessions deals with its delicate subject in a frank, matter-of-fact manner, and is infused with humanity, humor, and beauty. Though hardly pornographic, the film doesn’t dance around the sexual nature its narrative, so if glimpses of nudity and straightforward talk of sexual subjects aren’t for you, this movie probably isn’t your cup of tea. Everyone else, though, can watch The Sessions on Amazon.com’s streaming video-on-demand service for $3.99 (click here). I recommend this film highly. It’s one of the best I’ve seen in a while. (Please note: I have a raging dislike for 90% of American films made after 1980, so this is high praise indeed. BTW, I’m not a snob, but I do have a degree in Film… Okay, maybe I’m a snob…)

Scarlet Road is an Australian documentary that has received much acclaim, but, as far as I can tell, is so far not available for viewing in the USA. The film profiles a sex worker who specializes in catering to the disabled, and looks to be provocative and entertaining. I only wish I could see it. Here’s the trailer…

With that, I’ll bid you a sweet adieu. The show must go on… RIP George Bokos

16 comments:

I read something today that kind of goes along with your "Getting on with life" post. Pasted below. Cheers! Dave

_________________________The natural flights of the human mind are not from pleasure to pleasure, but from hope to hope.--Samuel Johnson

A truly powerful force in the universe is that of optimism. Optimism lies at the root of our mental and physical health. Feelings of hope can stimulate the body's immune system and inspire recovery from a critical illness.

Optimism expresses itself in the persistence and resilience of living things. A child learning to walk repeatedly falls down and picks himself up until he stands erect. A decade after the eruption of Mt. St. Helens destroyed the local ecology, life reestablished itself on this volcano with amazing abundance and rapidity. And despite its hostile environment, a sole dandelion miraculously pushes itself up through a crack in the concrete. That dandelion is optimistic that it can and will survive.

In the long run, the forces of love and life always triumph over those of fear and death. No matter how challenging the obstacles or difficult the tests, there is always cause for optimism.

Thanks for posting. Though I'm not sure that dandelions can feel optimism, the sentiment expressed rings true. When all is said and done, each of us is about as important to the universe as a pimple on a flea's ass. No matter what human dramas ensue, the world keep spinning, the sun keeps rising, and we just get on with it…

I am sorry for the loss of your friend. I have heard twice this week about people dying from complications from MS. My idiot neurologist told me I wasn't going to die from this but he is clueless about a lot of things. Hope? I had it after angioplasty which afforded me about a week of walking like a normal person and then went away. Chasing the high, I had the venoplasty twice more with no benefit. What a cruel joke. Not to be a downer, but it is what it is.

Well, I suppose you could say my friend died of a competition of MS, since it made him so miserable that he took his own life. I'm with you and hating the phrase "died of complications of MS". Well, if the person didn't have MS, they wouldn't of had those complications, so in fact they did die from MS. Why the obfuscation?

Sorry that your experience with venoplasty was a disappointment. Unfortunately, your experience has been shared by many. There is still so much to be learned…

Your posts - their crafted care, the delight of your writing - are becoming something that I look forward to.

Thank you for keeping your finger on the pulse of MS (secondary progressive, 17 years in, excited about life - trailridertales.blogspot.com)

The heat issue is huge in Australia where 100 degree days are becoming commonplace Climate change is not on our side - except in northern Europe where the ailing Gulf Stream is bringing harsher winters and wetter summers.

I am sorry for your loss, I too suffer from MS ('03)and have too lost someone very dear to me with complications (pneumonia)from MS..my sister. She passed on 2/14/03..how fitting that a sweetheart would pass away on sweethearts day! I miss her everyday. She and I would compare our symptoms and laugh when we would try to top each other. We are the youngest of 7 children, she was 51, I am 49. I honestly don't think it has fully hit me that she has passed--I too wait for her phone call, but I know shes in a better place. God Bless you and George, and know you will see each other again, blessings, Tammy P.

Marc, How perfectly you continue to express the feelings that are so real in the death of my son George. I am so happy that you two were such good, deep friends and I wish you could both have met when you could have run with the wind. All the comments are so understanding because they really "get"what it is like to live with MS. The others who need to understand either run the other way or stay in denial.I will not lie and say that we, his family, are OK with his death. Yes, he is no longer in pain and sentenced to a life unlike anything he hoped for, but it is still not all right. We miss him terribly and it is a hurt beyond understanding. I have begun to write my own blog, Xaidw Speaks.com, but it is hardly uplifting. It is filled with the powerlessness of knowing that I will never see him again in this life. There is too much suffering with MS, and not enough comprehension of the reality of the fear and deterioration this disease brings.Coincidentally, on the same day we met you Marc, Jason was also in New York and the three of you were having the CCSVI treatment. What a trio, so different and so strong, each in his own way. Courage comes in many forms....it is very personal, and all of you have it. Peace to all who seek and need it.

Laura, thanks for your kind words, and for the donation you sent to Jason's project. As you probably know by now, he met his fundraising goal, and is now working on getting the film screened in various places around the country. Hopefully it will make its way to your neck of the woods…

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...